Tuesday, September 28, 2010

Tuesday is over

Karly finished her appointments, Skyped her Latin class from the Inn, and has safely arrived home. All is well with her.

Kelsey completed her eye, bone density, and screening appointments today. We have a preliminary result from the Endocrine test. She does not produce the hormone ACTH mostly likely from the long term steroid usage. Cannot really do anything right now, but maybe after the transplant. She should be seeing a surgeon this week to assess her infected finger. It is too late to harvest her eggs, so pray the chemo and radiation don't make her infertile. At least we know that the process takes 2-3 months, so we can get started with Karly. Dr. Hickstein has been very thorough. We have heard only great things about him and his team...Ashley, Zetta, Joan, Anna, and Dr. Fry. His whole team has been given the highest praises. Tomorrow she starts with a pulmonary test and then a bone marrow biopsy. She is just so willing to help people learn how to deal with this disease.

I finally met a Dock 8 family from Pakistan living in Kansas. They have just arrived to NIH this week from a referral from their hometown dermatologist. They have 7 children, 3 with Dock 8. The three with Dock 8 are 6 years old and younger. Because their children are not presenting with the more severe symptoms, they don't see a need to transplant. They will hopefully be able to meet Kelsey in the next couple of days, so she can explain the progression of the disease, and they can see it. She started out like their children, so I hope she can relate information in a way they can understand. I guess we are considered ambassadors of Dock 8. Please pray that as we try to relate what we know to others, the love, mercy, grace, and faith of Jesus comes through.

I've had meals at the Inn the last three nights. I've been able to sleep. I even had a 15 minute seated massage tonight. Sounds like the good life, doesn't it. All blessings, for sure. Thanks for the prayers that are sustaining us.

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